Tuesday, July 31, 2007

Thank you, Health Central, for naming A Chronic Dose one of the Top 10 Pain Sites for 2007! I am very flattered, and happy to pass along the news that my friend Jenni at Chronic Babe also received one, along with several other informative, often witty, and always compelling sites. Keep up the good work, everyone!

Saturday, July 28, 2007

I’m no economist, but simple notions of supply and demand seem to dictate that if you offer a service to a captive market and meet with success, an inevitable increase in demand (and then more supply) will follow.

As logical as this sounds, I have to admit that for awhile I didn’t think the restaurant industry would take notice of what I already knew to be a clear demand for gluten-free dining—or at the very least, increased understanding of what gluten is and how it is incorporated in dishes.

Check out this interesting NYT article on GF dining in NYC. Turns out, savvy GF diners are proving that if restaurants cater to their needs, they will come. In droves, apparently. Long-standing mecca of gluten-free goodness Risotteria is mentioned (I am still dreaming of the breadsticks and chocolate frosting-stuffed cookies from last April), along with other restaurants that offer separate GF menus ripe with two things long absent from the GF dining experience: options and variety.

We’re a loyal lot, this band of celiacs who refuse to give up on eating out, and as the article illustrates, I’m not alone when I say that if I know of a restaurant that caters to my dietary needs, I will go out of my way to try it, and I’ll spread the word. Win-win situation, yes?

This has been a good week for me in terms of GF tolerance. I’m still adjusting to a dairy-free existence (I admit, I am a bit frightened to try the dairy-free, soy-free “cheddar flavored rice product” my well-meaning husband brought home from the grocery store today, but I’ll try it at least once), so knowing the GF horizon is a little less bumpy makes that easier. It can get somewhat daunting to plan a meal or peruse a menu when there are so many ingredients to avoid. I’m energized about the decision to go dairy-free—anything that even marginally reduces the mucus that chokes me is well worth it—but like going GF, it is still an adjustment.

The same day a friend forwarded me the NYT article, I had a more local encounter of the celiac-friendly kind. I think I’ve mentioned The Fireplace before for its gracious, accommodating nature and abundant native produce, but they’ve upped their GF game a bit since I was last there. They now offer a menu for celiacs that lists every item on the “regular” menu with a bold YES or NO next to each entry—yes meaning it is totally safe from cross-contamination and has no gluten, and no meaning it is not an acceptable offering.

The food and the menu were fabulous. And I think offering something like this is just as helpful for the servers, too—after all, if you don’t have celiac disease, it’s hard to keep track of all the things that contain gluten, especially if it’s a crowded night and there’s an extensive menu to check. It takes the pressure of both parties—I could make an informed order without needing to flag down our waiter with questions, and he could spend his time extolling the virtues of the great wine list with us instead.

Of course, at the end of the day it is my responsibility as the consumer to be educated and prepared, whether that means calling restaurants ahead of time, looking over the menu online, or being willing to be flexible when it comes to ordering off of smaller menus. Gluten and dairy will always have a large presence in most mainstream establishments, and it’s up to me to make sure I choose a restaurant where I can eat something.

But I’m not going to lie; when I walk into a restaurant and open up an entire menu where every single item is safe, it translates into one thing: a celiac foodie’s heaven.

Tuesday, July 24, 2007

As excited as I was to host Grand Rounds for the first time, I had a fair amount of trepidation, too. How was I going to arrange all these posts in an interesting yet logical way, one that did justice to the wide array of topics included and still appealed to all types of readers? The answer arrived on my doorstep in the neatly folded form of my trusty daily newspaper. Of course. I started my career in newspapers, and decided to use elements from my favorite print and online papers for today’s compilation of news, analysis, and debate.

Thanks for reading today’s edition!* Many thanks to Nicholas Genes for all his hard work in keeping this fantastic tradition going strong, and thanks again to everyone who submitted. You made my run as temporary editor-in-chief a great one.

Don’t forget to check out next week’s Grand Rounds at another Boston-based blog, Health Business Blog

Friday, July 20, 2007

I'm turning to you, thoughtful readers of the blogosphere, for some input on a decision that has been slowly building traction in the back of my mind for several days now.

Should I go dairy-free?

I saw my doctor this week, a follow-up appointment to see how I've responded to my antibiotics. My respiratory infection has definitely improved, but my bronchiectasis exacerbation from it is still pronounced, so I have a handful of new meds and inhalers to try and quell the chaos rumbling in my airways. I don't even remember how it happened, but dairy came up in our conversation. Of course, I've long known that dairy is a mucus-producer, and if there's anything I don't need, it is more phlegm in my life.

"I really don't consume much dairy," I told him, sheepishly looking at my cup of coffee on his desk, which clearly contained milk. I don't even like milk; even as a kid I never drank it on its own, it was merely a conduit to moist cereal, and as an adult, it's merely a conduit to what I think is better-tasting coffee.

But when I thought about, I do have dairy often enough. I eat cottage cheese a couple of days a week because it's a great protein source, and while I try to avoid cheese because of its fat content, I do have feta on my Greek salads regularly.

"Well, the less dairy you have, the better," my doctor said. I nodded.

The seed was planted.

And then I stumbled across this site in the comments section on Kerrie's blog (ironically, her original post included something I'd written about going gluten-free, so I'm now engaging in an amusing but totally productive game of blog-tag, I think :) ) and I started to think about giving up dairy more seriously.

Enter the back and forth dialogue in my mind: It would certainly be a big sacrifice, lots of labels to read and accommodations to make. Yet so was going gluten-free, and you wouldn't change that for anything, you know you feel so much better. Yes, but I have celiac disease, so clearly going GF would make me feel better--I am not lactose intolerant and don't think I feel any worse when I eat dairy, so would I even see results? But don't forget, you know you get more congested after frozen yogurt, so even if the only change was less phlegm and less exacerbation, wouldn't that be worth it?

And, finally, the remaining question: But your diet is already so limited. Wouldn't removing dairy make an already difficult dining situation (remember, one of your hobbies is trying new restaurants!) even harder?

Yes, but if it helped, wouldn't it be worth it?

Leaving the dialogue in my mind alone for a second, what you do think? Is it worth a try? Is it something worth doing in degrees--eg, removing "big" thinks like milk, cheese, etc but not whey and all those little tiny ingredients that appear on labels? (This reminds me of people who go wheat-free but still eat many other forms of gluten). Would I still get any benefit, or, like going GF for a celiac, is it something that only works when you do it 100 percent?

Sunday, July 15, 2007

I want your submissions! That's right, Grand Rounds, that wonderful weekly carnival of wit and wisdom (aka the best of the medical blogosphere), is coming to A Chronic Dose on Tues, July 24th.

Make my first time hosting a sucess and submit, submit, submit! C'mon, you know you want to!

There's no specific theme for the posts, but the more recent/timely the content, the better.

Please submit your entries by 11 pm on Sunday, July 22, and put "Grand Rounds" in your subject line. Make sure you include your post's URL and title, the name of your blog, and a brief description of the post.

The "E-mail me here" link is conveniently located on the sidebar to your right, underneath my picture and profile. (It's also laurieDOTedwardsATgmailDOTcom)

Great, we thought to ourselves. How exactly do we go about resolving that?

Now I am not one to engage in pet blogging, mainly because I recognize few people will ever find my dog as charming, adorable, or entertaining as I do. But I made an exception in this case, as the vet’s words and her words of instruction lingered in my head all week.

Admittedly, my dog (who is, incidentally, as charming, adorable, and entertaining as they come) does have some issues. She was abandoned twice before we adopted her from a rescue as a puppy, and she has an exorbitant amount of fears: anything with wheels (bikes, strollers, skateboards, scooters, wheelchairs, roller blades, luggage, etc), anything that makes a sudden noise, anything that causes sudden motion, anyone she doesn’t know, etc. The daily hum of anxiety that accompanies her intensifies into sheer panic when we’re not around her, since apparently we’re her ultimate security blanket.

“The best thing you can do for her is to let her experience life. Expose her to as many things as possible and help her learn to see she doesn’t have to be scared of every new thing,” our vet told us. Of course she gave us even more specific instructions, but her overall assessment was powerful in its simplicity.

Just live, just do, and you’ll get to the point where you’re so busy doing and living that there’s no room for fear.

I don’t have an anxiety problem, nor am I besieged with fear by things with wheels, things that move, things that make sound, strangers, or anything I’ve never seen before. By no means am I scared of life. But I do doubt my body sometimes, doubt that it will be up to the task at hand, doubt that it will come through for me when I depend on it.

I had my sweet, scared little girl in mind this week when I did something I haven’t done in years: I rode a bike. Not a stationary bike in a city gym like I’ve ridden for years, but a regular old dusty dirt bike. And I didn’t ride through the suburban developments and sidewalks of my youth, but on an honest-to-goodness trail, a pretty famous trail, even if I only did part of it.

Once I got my license as a teenager, I left my mountain bike in my parents’ garage to collect rust and cobwebs. In the ten years that have elapsed, my body has been through a lot. I was already well accustomed to my lungs preventing me from doing things, (I’d dealt with that since birth), but something in me changed after my adrenal system crashed. I got so used to my body failing me and so used to the small losses that amounted to a significant whole that I forgot how to trust my body again.

It’s been three years since my body came to a standstill (literally) and physically the symptoms of adrenal depletion are so much better, but my mental conditioning hadn’t caught up completely. I put in long hours, I work seven days a week, I go to the gym, but until this week I hadn’t pushed myself out of my comfort zone because it didn’t even occur to me I’d be able to.

The day we set out to ride, the humidity was temporarily gone, my infection was under control, and for once, my lungs were cooperating. Now, would the rest of my body?

It was never the bike that I feared, it was the possibility that I’d get several miles out on the trail and something would happen and I’d get stuck there, or that I’d start the day feeling pretty good and end it in a state of setback.

Instead, I got on the bike and just rode. And rode. And I was too busy moving that I didn’t think about what my body might not be able to do.

Saturday, July 07, 2007

There are some things in life I am constitutionally opposed to: cartwheels (can only do them in water), math (you already knew this!), fried food (even before the celiac diagnosis), decaf coffee (what's the point?), reading maps (I go by landmarks), and little things that may not relate to physical constitution per se but grate on me nonetheless, like when people use "it's" when they mean "its" and the gratuitous use of the phrase "myriad of"--constitutionally speaking, I am a dork, I suppose.

But there are two huge things I don't tolerate well that I have saved for last: humidity and relaxation. As it is summer in Boston and I have just turned in the draft of The Book, I am facing both of them at the same time. What's a Type A girl with dodgy lungs to do?

Most people love the advent of summer--the flip-flops, the free concerts in Copley Square, the ice creams and flowers and outdoor dining. I like all of those things, too, but I am a hostage to humidity. Once the temperature rises, I know days of sequestering myself in my air-conditioned condo and only leaving to take advantage of my air-conditioned gym are in store. The humidity literally takes my breath away; I step out the door and my airways seem to snap shut. I wheeze louder, cough more, and assume the ghostly pallor of not getting enough air that stands out even more since everyone else is tan. I get excited for the cool, cloudy days everyone else bemoans because I can take long walks outside, and I favor the beach late in the day when everyone else is leaving because the air is better.

And relaxation? I like to do a lot of things: walk the dog, go to restaurants, play games, get coffee with friends, etc. It's the doing nothing part that's difficult. I get edgy and antsy--there is work I could be doing, there are projects I should be starting, there are so many things I could do with this time. I am so used to multi-tasking and juggling a million different things that it actually feels weird to watch a TV show with my husband without simultaneously checking e-mail, making to do lists, and jotting down notes for revisions. I think the fact that our wireless router stopped working this week has been good for me, painful as it has been.

I even brought my laptop on our honeymoon. There. I said it. (Cue sheepish blush).

But before you start to wonder why my husband ever married me in the first place, I will admit I didn't actually use it very much. In fact, the only time I logged on the Internet was to make sure my enrollment in my new husband's health care was processed immediately. (I know, very romantic, but necessary. Illness doesn't give a fig about honeymoons). But just knowing my laptop was near me at all times had a calming effect, and I am proud I didn't spill any of Napa Valley's finest on it.

And yet here I am, facing down several days of vacation and humidity. I've got dinner reservations, activities planned, and multiple wardrobe changes to "relax" my way, and new antibiotics, a Vest, a nebulizer, and central air to combat the humidity and an annoying summer infection.

Between you and me, I'm happy with a week's worth of good meals, Scrabble, and some hiking (off-peak hours, of course). And the laptop.

Since July 4th is a day dedicated to the idea of independence, for patients it is the perfect opportunity to explore the intersection of pain and independence. I’ve had an on again, off again relationship with pain for over a decade now. I grew up with the pain of the broken bones high doses of steroids caused, the pain of coughing so hard my throat became raw, and the pain of tendonitis and ailments like that. But these were temporary dalliances, not full-blown affairs, and I treated them as minor disruptions.

It wasn’t until I developed chronic fatigue syndrome (CFS) in high school that our relationship was sealed in a more permanent way. Unlike the temporary pain of a broken wrist or a reconstructed ankle, my muscle and joint pain were always present, loud and strident at times, quiet and unobtrusive at others, but always there, lurking in the shadows and begging to be noticed.

Throughout college and into my twenties I handled my pain by pretending it didn’t exist, the same approach I used to deal with my respiratory conditions. The worse I felt, the harder I pushed, as if taking on too many commitments somehow proved I wasn’t sick, I didn’t have pain, and I didn’t need help. It’s no coincidence that the years of my life when I was the most seriously ill and in and out of the hospital frequently corresponded with the years I was the most overcommitted.

This cycle seemed destined to continue, because slowing down would mean confronting the true nature of my relationship with chronic pain.

And then two things happened within a few months of each other, two life-altering events that would have remained life-altering on their own but when combined, became a force too powerful for even my significant powers of denial to overcome: I met my future husband and my adrenal system decided to shut down. A lifetime of steroid treatments for my lungs had caught up with me, and when the toxic drugs that had mimicked the body’s hormones for so long were finally tapered off, my body didn’t know how to make adrenaline anymore.

Suddenly I had two competing relationships to juggle, one with the man I loved and one with a body racked with more pain and fatigue than I’d ever known. At some points, even moving my lips to speak was difficult, and the slightest brush of a finger on my leg muscles hurt. I’d lie awake night after night, desperate for sleep to cut through the haze of exhaustion but unable to rest because of the pain.

On the one hand, it was no longer physically possible to ignore my condition. When you can’t raise your arm to brush your hair properly, the truth pretty much slaps you in the face. Yet because I was spending more and more time with my then-boyfriend John, it was impossible to ignore my situation on so many levels. I was too tired to drive. I was too weak to carry my grocery bags. I was in too much pain to follow through on dinner plans.

Like any sane, compassionate person, John wanted to drive me, carry my bags, and pick up take-out when I couldn’t leave my apartment to go on a date. He also wanted me to cut back on my freelance jobs and make decisions about my schedule that would give me a fighting chance at feeling better. But at first, I eschewed his offers of help, I dragged myself to events I had no business going to, and I wouldn’t accept the fact I had to quit some of the jobs I really loved. I also didn’t want to admit how much my pain and fatigue affected John’s life.

I didn’t want our relationship—or any relationship in my life—to become about doing things for me, not with me.

And then I started to see that in refusing to accommodate my pain in any way or let people help me now and then, I was allowing my illnesses to define my personal relationships. I thought I was simply ignoring my pain, but in fact I was giving it center stage in ways both unproductive and damaging. My time with John was increasingly tinged with symptoms and setbacks, and it didn’t have to be that way as much as it was.

Finally, I became more comfortable acknowledging the long-standing bond I had with chronic pain. Instead of regret, I felt overwhelming relief. I stopped being stubborn. I cut back on my schedule so I wasn’t quite as tired and overworked. I rested ahead of time when I knew I had a social engagement or physically draining activity planned.

More than anything, I realized the freedom of choice: it was far better to ask John for help when I knew I really needed it than it was to be forced into accepting help when I had no other alternatives.

I’m not sure how much longer I could have denied the limitations of chronic pain if all these events hadn’t transpired simultaneously, but I am grateful for the timing. I thought I’d sacrifice independence if I abandoned denial but it turned out to be the other way around. When I let go of denial, I had far more control over my health as well as my relationships.